National Chiari Awareness Month – 2018

National Chiari Awareness Month – 2018

The month of September is Chiari Awareness Month. In May of 2013 I was diagnosed with Chiari 1 Malformation and Syringomyelia and my life since then has changed – tremendously. I remember going recently to a store, because it’s a place I visit regularly – they’re a sweet Vietnamese family, I’ve got the chance to get to know them. We were discussing Chiari the last time I went there, one of the daughters said, ‘besides going to the hospital when I was born, I’ve never been there.’ I was speechless, I know my way around – just about, every hospital in my area, I even know what hospital not to go to because they lack ‘my’ department – neurology. The difference between someone with Chiari Malformation, Syringomyelia, among many other different illnesses, is that we know too well what is like to be at a hospital – while others don’t. It’s an unfortunate truth.

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There are currently four types of Chiari Malformation and each are classified by the severity of the disorder and the parts of the brain that descend into the spinal canal. As you can see, I have type 1, this is when the lower part of the cerebellum called the cerebellar tonsils extends into the foramen magnum. This is where only the spinal cord would otherwise pass through. Chiari unfortunately goes un-diagnosed, and is first noticed during adolescence or adulthood, usually by accident during an examination of another condition. As it happened to me, I went into the ER in May of 2013 for what was suppose to be a quick ‘trip to the ER,’ but turned out to be far more serious than your typical ‘headache.’

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What surgeries have I had for Chiari 1 Malformation and Syringomyelia? As for the Chiari, in May of 2013 I had emergency posterior fossa decompression, here the surgeon created more space for the cerebellum as this relieves pressure on the spinal cord. At this time the surgeon also made an incision on the back of the head and down the neck area, and removed a small portion of the bone at the bottom of the skull, this is called, craniotomy.

In November 2017, for the Syringomyelia, I had spinal laminectomy in which they placed a syrinx shunt – this shunt (a flexible, tube like device, according to my surgeon it’s also less than the size of a hair strand in diameter) will remain in my body forever. The syrinx shunt diverts the fluid from the syrinx into another space in the body where it can be absorbed. There are a few locations where the fluid can be absorbed and this is what differentiates one shunt from another. The shunt I have is absorbed in the peritoneal space, also known as the abdomen. The space location is determined on the patients case and the surgeons personal preference.

Why spread awareness for Chiari Malformation? Without awareness there is no funding, without funding, there is no research, without research, there is no cure, without a cure, there is no hope. However, if not in my lifetime, maybe another’s, but I pray that there will be a cure for Chiari – someday.

Today, I’m still living with a number of ongoing symptoms such as difficulty swallowing, headaches, vertigo, imbalance, difficulty concentrating, etc. which also includes chronic pain. I need to be monitored for changes that can occur in the CSF flow or cerebrospinal fluid. I’m currently experiencing severe numbness on my left side, especially in my face and tongue – you’d never know it if you’d see me. However, I finally have a great neurological team that is helping by monitoring me, via MRI’s and managing my pain levels, via medication, as best as they can. It’ll always be a process, but it’s a process that with patience, it’s as tolerable as it can be.

The perfect cure for worry, is to trust in God. 

And in light of my series ‘Happy Meme Monday’ I’ve decided to include some Chiari Malformation memes. Enjoy.

These memes – sum it all up. Have a blessed Labor Day.

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Visit my online store for Chiari Malformation awareness merchandise.

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Reblog Wednesday: How to Transition from Career to SAHM Without Losing Who You Are — No Plate Like Home

If you’ve had a job outside the home and you’re now a stay at home mom or parent, you know that the decision didn’t come too easy. Do you stay home or you continue to work?! Your decision, to leave the 9 to 5 to become a stay at home mom. I went through this roller coaster of emotions about 12 years ago, when I left the corporate world to stay at home with my oldest daughter. It was a tough decision but it was also a very good one.

Joanne from No Plate Like Home captured this so well about the transition, all the emotions and all the changes that occur during this change.

Hope you enjoy the post as much as I did!

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You did it. You quit your job to become a stay at home mom. Now that you’ve figured out how to live on one income and all of the logistics, you are starting to feel what it’s really like being home day-in and day-out. 1,970 more words

via How to Transition from Career to SAHM Without Losing Who You Are — No Plate Like Home

Chronic Pain + Time Management

Chronic Pain + Time Management

It’s no secret that I live with Chiari + Syringomyelia but did you know it’s also the reason for many of my negative thoughts. They are thoughts that trigger self-doubt and lack of confidence. The chronic pain, the aches, the body pain, back pain, the headaches, the stiffness in my neck are a daily reminder of the things that I can no longer do. It can really bring me down – if I allow it to. My days are planned out around the level of pain I’m in on that particular day. So, how do I manage my day to day while living with chronic pain – besides my pain medication of course! …. Time management.

Yes, that’s it, no magic to it! I manage my time wisely, I don’t over do it and I listen to my body – did I mention I have to plan my day around the level of pain I’m in?! Yes, after that, I do whats a priority first and go from there. I don’t have to get everything done, but I do try to do what’s most important. And this can be tough when your day – like mine, will usually include days where I need to visit the doctors or have to do a routine MRI or CT Scan – yeah, those are fun …. said no one! If that’s the case, I’ll tweak my day knowing that my body and brain will be extra tired because of that doctors visit and will consider my day extra short.

This next thing is really important when living with chronic pain and I know it can be difficult to do is, to rest. I need to find time to rest. If I can’t lay in bed, I simply sit down for a minute or two or three, but I need my rest – better yet, my body craves rest. If I don’t get enough sleep, my body will feel it the next day. So, if I plan something where it involves leaving my house, I also have to plan to rest when I return. I do this so that I don’t get the wrath from lack of sleep afterwards. I can get anything from vertigo, to nausea to having vision issues. It all goes south really quickly from lack of sleep.

So, how do I manage my time as a stay at home mom with my babies?! Well for one, they’re all not on diapers – phew, two, I know it’s summer time but they do school related papers for me – no I’m not that crazy mom, and three, schedule! The littlest ones are on a schedule, they take up to a three hour nap or nap twice a day. Meanwhile, the older ones will be eating, reading, arguing playing, etc. And as for myself, this is my time to plan on a post for my blog – like a ‘Meme Monday,’ ‘Reblog Wednesday or ‘Nail File Friday’s’, even something on my online shop, eat and shower! Yes! This ‘nap time’ is ‘mama’s time.’ I do this because that’s what I’ve put on my plate and I so need I to be efficient with my time.

All the hard work and determination you put into anything today will pay off tomorrow.

Lastly, the thing that I’ve experienced with chronic pain is that besides it being an invisible illness, you have to self motivate yourself. You must! No one knows better than what you’re going through than you. If you don’t, this thing – chronic pain, will bring you down with it!

I would love to know how you manage your time while living with chronic pain, share your thoughts.

A-

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Exercising With Chiari 1 Malformation

Exercising With Chiari 1 Malformation

I often refer to my short life time as, pre Chiari life and post Chiari life. The things I used to do and the things that I can no longer do. And I say that I can no longer do, because of the physical limitations I have now since my Chiari + Syringomyelia – a congenital diagnosis. It’s baffling to know how much a diagnosis can be the result of so many life changes. The most simple things can now take so much effort and energy – not to mention can bring on some unwanted physical pain.

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My pre Chiari life, the married life, the stay at home mom life with kids included in particular enjoying lots of the outdoors. My days consisted of going outside daily. I especially loved to run, so I would get the littlest ones in the stroller while the rest peddled beside me in their tiny bicycles. We had a daily schedule that included the outdoors, after breakfast we went outside with the ball and spent sometime breathing in some fresh air and after lunch, right before their nap time, I’d get us all ready so that this mama could get a nice jog. So, simple, so refreshing, something the children really looked forward to.

My life post Chiari includes a lot of doctors appointments – from regularly visiting the neurologist and primary, to regular MRI’s to CT Scans, medications – most on trial run to ‘see’ if they help with the pain, what pain you ask, back pain, neck pain, head pain, anything from vertigo to headaches, imbalance and sensitivity to light from the sun to headlights, just to name a few.  My weight with all this going on has – understandably has been fluctuating and now being at the heaviest. Aside from the obvious and that is the pregnancies I’ve had, Chiari isn’t much help in this area either.

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When it comes to exercising, Chiari can really feel like it’s holding me back. I know what you may think and I’m really trying not to be ‘Negative Nancy’ but, with the physical pain I have, it’s hard to get outdoors. My goal is to lose the weight but not break my back in the process – literally.

Here are some helpful tips I’ve found while researching safe ways to exercising while having Chiari Malformation.

  • First and foremost speak to your doctor. The doctor can provide an exercise program to get you started and give you the OK to begin.
  • If you’ve been through Physical Therapy, do you remember the exercises you would do with your therapist? They test you to know how well you can bend, walk around, balance, reach, check your heart rate while you’re active, all these go hand in hand with the exercising that you should and should not be doing.
  • Choose an exercise based on the symptoms and extent of the malformation.
  • The right exercise can ease the stress on the neck.
  • There are low impact exercises that you can try such as walking, swimming and pilates
  • Walking, be sure you’re wearing comfortable walking shoes.
  • Pilates, strengthens your core, abs, obliques and lower back, it helps keep your body balanced and stable. It keeps the spine stable and safe. This one is recommended by the department of neurology at the hospital where I was operated for Syringomyelia but they also specialize in Chiari Malformation.
  • Chiari Malformation patients have problems with the vertebra and disc in the cervical spine resulting this area to be unstable. So, many exercises including lifting weights could potentially be dangerous.
  • Lifting weights is not recommended as this can put pressure and strain on the neck. Straining can increase CSF pressure and if there’s an obstruction, this can lead to problems. What is CSF? It’s the medical abbreviation for ‘Cerebrospinal Fluid’ which is a watery fluid that is continuously produced and absorbed and that flows in the ventricles within the brain and around the surface of the brain and spinal cord.
  • Find a gym or classes in your area that offer programs for people with disabilities.
  • Speak to your doctor before beginning an exercise regimen and if you’re going to change it or begin a new one. Your doctor will know if your condition will allow for more activity or will recommend you keep your exercise light.
  • And finally, always listen to your body, never overexert yourself and don’t over do it. If you begin to feel weak, dizzy or light headed, stop right away.

If you have Chiari – or know of someone, and are doing an exercise regimen, let me know in the comments, I’d love to know what it is.

Hope you have a great day.

-A

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‘Brain On Fire’ – True Story Made Into Netflix Movie

It’s not ironic that after being diagnosed with a congenital defect like Chiari Malformation my fascination with the brain and neurology overall has flourished. There aren’t many opportunities where I can watch the morning news without quickly being pushed to switch the channel to more important things like Elmo and Peppa Pig – my kids favorites.

However this week, this particular morning was different, I was able to watch Megan Kelly on Today interview Susannah Cahalan and Dr. Souhel Najjar – to say that this interview and as I watched the movie was both shocking and captivating is an understatement. I was so eager to know more about her story that I already watched the movie, I’m not one to do that, as I’d prefer to read the book first. If I can throw some names out there to capture more of your interest in this Netflix original, Chloë Grace Moretz plays Susannah Cahalan, Carrie-Ann Moss plays her mother, Jenny Slate her friend and co-worker and Tyler Perry plays Richard, her boss at the New York Post. Susannah Cahalan captures in her book ‘Brain on Fire’ in what she calls, her ‘month of madness.’ Without giving too much away so you can grab this New York Times bestselling book and/or watch the movie on Netflix, I’ll try to be brief on Susannah Cahalan’s journey after going misdiagnosed. She retells the events that took place prior to her diagnosis made by Dr. Souhel Najjarof of an auto-immune disease called Anti-NMDA receptor encephalitis, this is an acute form of brain inflammation that is potentially lethal but has a high probability of recovery with treatment. Although there’s a range of  neuro-psychiatric symptoms some may include;

  • cognitive impairment
  • memory difficulties
  • seizures
  • involuntary movements
  • slowed or loss of ability to speak
  • behavioral changes such as agitation
  • loss of inhibition
  • hallucinations (visual or auditory)
  • paranoid thoughts
  • severe anxiety
  • sleep disruption including severe insomnia
  • decreased level of consciousness – to the point of unresponsiveness, catatonia or coma
  • weakness or numbness of part of the body
  • loss of balance
  • vision changes

Dr. Souhel Najjar was able to diagnose Susannah Cahalan using a test that involved her drawing a clock, this is a test that is normally given to people that are thought of having dementia or Alzheimer’s disease. Susannah rather than drawing the clock’s face with the numbers going from numbers 1 through 12 going around. The disease caused her to draw all of the numbers 1 through 12 only on the right face of the clock. This happened because the right side of her brain, which regulates the left side of the body, was inflamed. Dr. Souhel Najjar helped her from being placed in a psychiatric ward because she was already thought to be losing her mind, to being bipolar and to having schizophrenia, to name a few. This doctors determination to finding Susannah again, helped her on her road to recovery and rebuild her career as an up-and-coming journalist at the New York Post.


Book Available On Amazon – Brain on Fire: My Month of Madness

As someone who went misdiagnosed for years with Chiari Malformation and Syringomyelia , even after multiple testings, blood work, MRI’s and spinal taps, and still continuing to be misdiagnosed, this movie struck a cord. Chiari Malformation is found in only 1 in every 1,000 people and even after decompression, I am still living with symptoms, including memory difficulties, insomnia, weakness and numbness in the body, loss of balance to name a few. As Dr. Souhel Najjar states, only 10 percent of people with the disease found in Susannah Cahalan were properly diagnosed at that time. However, a better understanding of the disease and its symptoms has resulted in more frequent diagnosis and treatment today. This is such an inspiring journey of one woman’s long road to rebuilding her life after being misdiagnosed.

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You Have More Than You Know

You Have More Than You Know

Often times it’s easier to dwell and think of all the negatives that are in our lives. I think of my health, of the downward spiral it’s on and it’s so easy to get down, get sad and be a pessimist. The positives isn’t near in sight. But there are positives, to everything, to it all. I’ve often times think of the positives that Chiari and Syringomyelia has brought to my life. It’s allowed me to stay grounded and to live in the moment. I always thought of hospital stays as something foreign. However, having been in the hospital for weeks on end recovering from surgeries brought on by Chiari, it’s given me a whole new outlook on hospitals. There are so many people there, recovering, learning to walk, learning to dress – I was in that position at one point in my life, learning it all – all over again, from learning to walk, to going up and down stairs to learning to move my head from side to side to learning how to dress myself – I was about 28 years old at that time with three littles at home. So many people there feeling lonely, scared, hopeless, frustrated and sad. I’m so thankful to have seen that. It allowed me to see that even though I’m going through something very much valid, there’s also always someone else going through it worse than I am. There are people needing so much more than I do, having a grateful heart for what I have and changing perspective allows me to see what’s right in front of me. Only then is when I realize that I have so much more than I know.

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While doing a summer assignment with my oldest son, something stayed with me, it’s from a Swedish folktale titled, “The Laughing Magpie.” The two lines are …

“I laugh because you would rather be sad than fix your own problem.”

Know that you are bigger than any obstacle and any struggle you may be facing today.

“Silly boy, don’t you see that everything you need is right before your eyes?”

If we stop and open our eyes, we can gather the resilience and the inner strength that lies within.

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Photo: Joseph Barrientos

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Surgery – Faith Over Fear

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Surgery he said. Another surgery – I need a minute.

The preparing, the mental preparation, the anticipation and the recovery. One can never be used to surgery – I can never get used to surgery, one can never feel at ease knowing they’ll be seeing yet another surgeon or specialist, one can never be used to going into that doctors office and explain what’s wrong. You can definitely can never get used to being seen, most of the time half naked, being written on, poked on, needles ready and all eyes focused on you. They’re ready to see you break down, they’re ready to comfort you and they want to see your reaction. One can never be ready to be told, “it’s time” and have a team of unknown medical professionals wheel you in the operating room. The operating room, such a cold place – why’s it so cold, so unwelcoming, full of devices, beeping sounds all around, people with masks trying to make you feel comfortable, but how?! How do you feel comfortable, it’s cold and it’s the unknown – all over again. It’s happening all over again.

The surgeon called me last week and said, “results came in, good news, it’s benign, but it needs to be removed, when’s surgery good for you?” Once again, I felt alone, cold and afraid of the unknown, but why, I’ve been down this road countless times – too many to count. Either that or I’m just embarrassed to write the number down. In my short years, I’ve met my share of doctors, surgeons, nurses, hospital rooms and operating rooms. I’ve felt my share of needles, had my blood drawn plenty of times but am still uncomfortable. The hospitals make me feel uncomfortable, but it’s during these times when you leave it all in His hands and allow it all to be left up to the doctors. No matter how many times I’ve been down this road, I can never get used it.

Faith over fear knowing that my heart and soul will be at peace knowing that this is my journey. My journey, my story to. There’s no one stronger than you, no one with unique health circumstances.

This makes you special – I am special because I am 1 in 1,000 due to Chiari and it reminds me to slow down and live at the moment.

Have a wonderful night.

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